Pedia Pain Focus

Chronic pain is often overlooked, and when it comes to children, it is even more so. The continued neglect of children's pain affects the ability to truly evaluate the extent of the problem and challenges these kids and their families face.

The United States Pain Foundation, a pain advocacy organization, conducted a survey to assess how children with a pain diagnosis and their families experience chronic pain, what challenges and barriers they face and what they hope for in their pain care.

In this episode, I'm joined by Nicole Hemmenway, the current CEO of the US Pain Foundation and the Founder of the INvisible Project and Casey Cashman, Director of Fundraising and the Pediatric Pain Warrior Program part of the US Pain Foundation. They are strong advocates for pediatric pain, inspired by their own pain experiences. They discuss the findings of this survey, share their experiences with the pediatric pain patients and families that they support through their programs. They also share their hopes and some possible directions to address some of the challenges identified in this survey.

As healthcare professionals and clinicians, these findings are eye opening and a call for action to collectively invoke change in the care of pediatric chronic pain.

Takeaways In This Episode

• Chronic pain is frequently overlooked due to its subjective nature

• Why Ms. Hemmenway and Ms. Cashman got involved in the pediatric pain work, US Pain Foundation and the Pediatric Pain Warrior program

• The reason(s) that prompted this survey

• Survey findings

• How much focus should be on the number rating of the pain and how meaningful, helpful that is.

• Valuable way to assess and inquire about chronic pain and a patient's progress

• Psychological impact, extent of mental health issues including self-harm, suicidal thoughts, ideation and attempts amongst pediatric chronic pain patients

• Burden of disease on the family - financial and psychosocial

• What therapies do patients and families wish were emphasized more - (Hint: Medications were at the bottom of the wishlist!)

• Barriers to chronic pain care

• Psychological toll of having to evaluate whether you can afford a therapy and how it may be/ to address it.

• Best ways for parents to discuss these barriers with their child's physician
• Nicole and Casey's message to the listeners

Links

Nicole Hemmenway

Casey Cashman

Connect with Nicole Hemmenway and Casey Cashman

US Pain Foundation-Pediatric Pain Report 2021

Pediatric Pain Warrior Support Groups

U.S. Pain Foundation

Pediatric Pain Warrior

Register for upcoming Pediatric Pain Warrior Support Group

Clinicians' Pain Evaluation Toolkit

Proactive Pain Solutions

About the Speakers

Nicole Hemmenway

Currently serves as CEO of the U.S. Pain Foundation, and directs the INvisible Project, an online and print magazine that highlights the experiences of people living with pain. Nicole is also an author and motivational speaker. Her book, No, It Is NOT in My Head: The Journey of a Chronic Pain Survivor from Wheelchair to Marathon, details her struggles and triumphs in dealing with complex regional pain syndrome, a debilitating neurological disorder. In September 2015, Nicole was featured in a campaign in USA Today in recognition of her role as an advocate for those living with chronic pain; and in 2017, she received the Unsung Hero Award for her work in the pain community. Nicole lives in the Bay Area with her husband and three young sons.

Casey Cashman

Serves as the Director of Fundraising and the Pediatric Pain Warrior Program. Casey Cashman uses her voice to fight passionately for the rights of people with pain, especially children. She has lived most of her life with multiple, serious health conditions, including reflex sympathetic dystrophy/CRPS and Ehlers-Danlos syndrome, among others.

Over the years, she began to connect more with patient organizations and realized she had a passion for helping others like her. In 2015, she was featured as a participant in the INvisible Project, which led to her joining the U.S. Pain Foundation as a staff member.

Before U.S. Pain Foundation, Casey spent many years working in Human Resources. She brings this knowledge and experience to the table in her role as director of the Pediatric Pain Warriors Program, where she provides compassionate support to kids with pain and their families as they travel along their pain journeys.

Casey also spearheads U.S. Pain's fundraising efforts, and has helped create various programs and collaborations designed to support the organization's free programs and services

Her son, Tyler, is also a budding advocate for the pain community. In honor of his mom, he founded Points for Pain, a fundraising program that has raised more than $100,000 for pediatric patients.

Treatment of pain is challenging to say the least. For one it is difficult to understand the complexity of the pain experience. This episode explains the components of nociception and the pain experience. It also examines the targets for pain control and thus provides comprehensive framework for choosing the right analgesic treatments!

Takeaways in This Episode

• Components of Nociception
• How a noxious injury becomes a pain impulse
• The pain perception pathways
• Interpretation of pain
• Modulation of pain
• Peripheral and central targets for pain control
• How various pain treatments work and at what levels
• 3 Unique features of pain - Wind-Up Phenomenon, Hyperesthesia, Central Sensitization

Links

Other Helpful Episodes:

Episode 80. Stop Treating Pain Like a Symptom

Episode 79. Pain Amongst Neonates, Infants and Young Children with Dr. Kanwaljeet "Sunny" Anand

Proactive Pain Solutions Physicians Academy

Clinicians Pain Evaluation Toolkit

Pain isn't simply a symptom of another disease or a result of another noxious or traumatic event. It's an independent entity in itself in majority of the situations. It's time we stopped approaching it with the Cartesian model framework.

Join me in this episode to learn about how and when a pain can be considered a symptom and when it needs to be treated like any other independent chronic diagnosis, and why that is important.

Takeaways in This Episode

• The reason(s) I am even talking about this
• The biggest misconception about pain
• Why this misconception get propagated
• Classification of pain and why that is important
• What I mean by "not all pain is created equal"
• There's more to chronic pain than just "chronic pain" - classification of chronic pain as defined by IASP task force and the WHO
• Major differences between acute and chronic pain
• Mechanisms at play in acute and chronic pain
• The benefits of understanding these distinctions and classifications

Links

International Association for the Study of Pain (IASP)

Other Relevant Episodes:

Episode #56. Making Pediatric Pain Matter.... with Dr Christopher Eccleston

Episode #78. Remodeling Pediatric Pain Management in Emergency Rooms with Dr. Samina Ali

Episode #62. Metaphors for Better Pediatric Pain Management

Episode #25 . Role of Epigenetics in Chronic Post-Surgical Pain with Dr. Vidya Chidambaran

Proactive Pain Solutions Physicians Academy

Clinicians Pain Evaluation Toolkit

There's no better way to kick off September as the Pain Awareness Month than bringing you a conversation with Dr. Kanwaljeet S. Anand, whose research took the medical world by storm, even risking his license, as he sought out to answer the question of; what if we give children anesthesia and analgesia?

I truly believe that he is the reason why my career as a pediatric pain and palliative care physician exists today and serves as an available path for many healthcare professionals.

In this episode, Dr. Anand, a professor of Pediatrics, Anesthesiology, Perioperative, and Pain Medicine at Stanford University School of Medicine, describes his groundbreaking research back in the 80s, when a popular held belief was that babies don't feel pain!

With the findings and intervention offered in his RCT, they were able to cut down the infant mortality rates by half. It is the work of doctors like him that paved the path for someone like me to practice pediatric pain management as a specialty-- hoping to save and improve the lives of many more children by debunking the fallacies that still surround children's pain and its management.

Takeaways In This Episode

• What fueled Dr. Anand's desire to research perioperative care for infants
• His hypothesis around morbidity and mortality of neonates and infants undergoing surgeries, relationship to anesthetic management
• Conducting the randomized controlled trial study and its results that changed the history and trajectory of childrens pain and perioperative management
• Sometimes it's worth picking the fights
• How his study gained momentum and changed how the healthcare world approaches pain management for children and infants
• When and how infants develop the ability to feel pain
• The long-term consequences of poorly or inadequately managing children's pain
• Changing the minds of colleagues who perpetuate the belief that children are "hardy" and will "get over it"
• Dr. Anand's message to the audience

Links

Connect with Dr. Kanwaljeet S. Anand:

Stanford Profile

LinkedIn

Love, Pain, and Intensive Care. K.J.S. Anand, Richard W. Hall

Clinicians' Pain Evaluation Toolkit

Proactive Pain Solutions

About the Guest

Kanwaljeet S. Anand, MBBS, MD, D Phil, FRCCM

He is currently the professor of Pediatrics, Anesthesiology, Perioperative, and Pain Medicine at Stanford University School of Medicine. He directs the pain and stress neurobiology lab, the Jackson Vaughan Critical Care Research Fund, and he serves as the Editor of the journal Pediatric Research and is the Division Chief for Pediatric Critical Care at the Department of Pediatrics at Standford School of Medicine.

He graduated from M.G.M. Medical College, Indore (India). He received the D.Phil. degree as a Rhodes Scholar at the University of Oxford, followed by a post-doctoral fellowship at Harvard Medical School, a categorical Pediatrics residency training at Boston Children's Hospital, and a Critical Care Medicine fellowship at Massachusetts General Hospital in Boston.

He is the recipient of innumerable awards, including the Dr. Michael Blacow Award from the British Pediatric Association in 1986, the Pediatric Resident Research Award from the American Academy of Pediatrics, the inaugural Young Investigator Award in Pediatric Pain from the International Association for Study of Pain in 1994, the Jeffrey Lawson Award for advocacy of children's pain relief, the highest recognition in pediatric pain medicine in the United States. He's also been awarded many awards across Europe in many countries such as the Nils Rosén von Rosenstein Award from the Swedish Academy of Medicine and the 2015 Journées Nationales de Néonatologie Address at The Pasteur Institute to name a few.

For his dedication and work in the field of pediatric pain management, he is considered a world authority on pain and stress in newborns and pain management in infants.

When the gold standard for pain assessment is verbal report, children's pain assessment and management requires specific knowledge and understanding. Children at these important stages of growth create key memories-- and the last thing we need is a whole generation of children that associate getting medical attention with pain.

Globally, when children come in to the emergency room, pain is a component of their presentation 50 to 80% of the time. As medical practitioners, prioritizing the critical elements of a child's illness should be the main concern-- but we also must ease their pain and suffering related to their health condition and prioritize minimizing their procedural pain.

In this episode, Samina Ali, MD, a pediatric emergency medicine physician and pain expert at the Stollery Children's Hospital and University of Alberta, Canada shares her clinical and research experience in pediatric pain. Realizing that emergency room visits and procedures may have just as much capability to distress and traumatize a child beyond their presenting condition, she has dedicated her work to researching how she and fellow medical practitioners can make children and their families feel safe and empowered through institutional culture change as well as effective knowledge translation and mobilization.

In creating an ER or any healthcare setting that caters to patient comfortability beyond just treating symptoms and illnesses, we can harbor a safer and more welcoming environment which can improve children's experiences with receiving medical care, minimizing anxiety for future encounters, improving quality, safety, efficiency of and satisfaction with the work healthcare professionals perform.

Takeaways In This Episode

• What motivated Dr. Samina to research pediatric pain and implement effective pain prevention and treatment strategies.
• Common pain presentation in the emergency department and how it may impact the work.
• Top reasons why pediatric pain may not get the needed priority and how practitioners handle competing priorities among patients in the emergency room
• What the big leap of faith in pediatric healthcare is and how that affects pediatric pain.
• Successful approaches she has spearheaded within her institution and beyond for better pediatric pain care
• Helpful steps to help other practitioners engage in pain care efforts
• Factors that result in or lead to disparities in pediatric pain care
• The two main benefits of prioritizing pediatric pain care
• Her view on advanced technology-based interventions and their roles
• The common barriers in emergency rooms and how can they be addressed
• Engaging administration to facilitate a top-down approach
• Leveraging patients and their families voices to invoke change
• Dr. Samina Ali's message to the listeners

Connect with Dr. Samina Ali:

Website

Twitter

Links

Ep 64: Prevention and Management of Procedural and Needle Pain and Anxiety Among Children

Solutions for Kids in Pain (SKIP)

Translating Emergency Knowledge for Kids - Procedural Pain

Translating Emergency Knowledge for Kids - Pain Treatment

Commitment to Comfort

Clinicians' Pain Evaluation Toolkit

Proactive Pain Solutions

About the Guest

Samina Ali, MD

She is a professor of Pediatrics and Emergency Medicine at the School of Medicine and Dentistry at the University of Alberta in Edmonton, Canada. She is also the research director at Pediatric Emergency Department Medicine. She holds provincial and national funding for the study of children's acute care and emergencies and pain in the country and supervises many learners with both clinical and research backgrounds.

She has served as the director for pediatric emergency medicine from 2003-2008 and again, from 2010-2013. She was also the Director of Professionalism for the University of Alberta from 2010-2013, and also serves as the Assistant Dean for Professionalism for the Faculty of Medicine and Dentistry.

As a practicing pediatric emergency physician, she is witness to the pain children experience from illnesses, injuries, and emergency room procedures. She has created a research program focused on improving children's pain and distress, mainly related to emergency department visits and procedures, and she shares many of those ways to improve pain experiences for the children, both in the hospital and in the community. In addition, she has been recently involved in the Canadian large effort for knowledge mobilization and knowledge translation in relation to her efforts in alleviating children's distress and empower them and their families.

Chronic pain in children can be a really serious condition and many of them may have a long journey to get where they need to be!

Says Julia Wager, PhD, an accomplished pediatric pain psychologist and head of research department, at the German Paediatric Pain Center, Children's and Adolescents' Hospital Datteln, Germany.

Join me for part 2 of my conversation with Dr. Wager to learn about the short and long term outcomes of intensive interdisciplinary pain rehabilitation program for pediatric chronic pain.

She discussed their short term and longitudinal data (8 years) from intensive pain rehabilitation program for pediatric chronic pain management.

As Dr. Wager says - We want them to be a child again and not a chronic pain patient for life!

Discover what these surprising findings are and what impact they have on short and long term management of these children!

Takeaways in This Episode

• The immediate, short and long term outcomes from the intensive interdisciplinary pain treatment of children's chronic pain
• Outcomes for the parents, caregivers and family
• Mental health and emotional outcomes and implication of these outcomes
• What findings surprised them amongst these children with chronic pain.
• The implications of the these outcomes on management of these children's pain
• Unique vulnerabilities of children with chronic pain
• 3 top instructions and type of awareness that is important for patients (children and their families) to know and be vigilant about.
• What the after-care upon completion of the intensive pain rehabilitation program should include
• Barriers to intensive pain rehabilitation program
• Predictors of success for these patients
• Financial outcomes and implications of intensive pain rehabilitation program
• Dr. Wager's message to healthcare professionals

Links

Julia Wager, PhD

German Paediatric Pain Centre

Related articles by Dr Wager:

Long term outcomes of children with severe chronic pain

Impact of Pediatric Pain Rehabilitation Program Part 1. Epi #76

List of Pediatric Pain Clinics

Proactive Pain Solutions

Clinicians Pain Evaluation Toolkit

In society and healthcare, people understand that kids with cancer do suffer pain, but people did not understand that children without an obvious somatic condition could suffer pain that really need treatment; says Julia Wager, PhD, an accomplished pediatric pain psychologist and head of research department, at the German Paediatric Pain Center, Children's and Adolescents' Hospital Datteln, Germany.

Join me in conversation with Dr. Wager to hear about the necessity and impact of intensive interdisciplinary pain rehabilitation program for pediatric chronic pain.

This is a 2 part episodeIn this episode we discuss the nuts and bolts of a pediatric pain rehabilitation program, who it is appropriate for, the approaches, team make up, fiscal considerations, unique offerings of the program and why they are important, while part two (episode 77) will cover the short and long term outcomes with longitudinal data from intensive pain rehabilitation program for pediatric pain management.

As Dr. Wager says - It's often the small things that make a big impact for a given child and the family.

Discover what these small things are!

Takeaways in This Episode

• How Dr. Julia Wager became interested in pediatric pain and intensive interdisciplinary pain treatment of children's pain
• The indications for an intensive pain rehabilitation program for pediatric pain
• Types of patients who are appropriate or not a good fit for this model of care
• The team make up
• Structure of the program
• Patient and family evaluation and treatment approaches for each
• Approaches for patient and family engagement in the treatment program
• Reimbursement and approval for intensive pain rehabilitation treatment for pediatric pain and ways to support justification when needed.

Links

Julia Wager, PhD

German Paediatric Pain Centre

Related articles by Dr Wager:

Long term outcomes of children with severe chronic pain

List of Pediatric Pain Clinics

Proactive Pain Solutions

Clinicians Pain Evaluation Toolkit

Research in the past decade has demonstrated a complex, bidirectional communication between the central nervous system and the enteric nervous system; the Gut-Brain Axis (GBA). This knowledge has provided much more clarity on many of the chronic pain conditions which previously had been mislabeled, misdiagnosed and mismanaged for sure, often being relegated to the category of "in their head", like the Irritable Bowel Syndrome, Functional Abdominal Pain and many more!

More importantly, it allows us to identify the underlying etiopathophysiology for these condition as well as the targets for treatments.

The concept of the GBA surely gives a whole new meaning and explanation to the expressions "gut feeling" and "butterflies in the stomach"!

Join me in this episode to learn what exactly is the GBA, how it plays a role in the pediatric chronic pain syndrome including and beyond abdominal pain and how to manage these conditions more effectively.

Takeaways in This Episode

• What Gut-Brain Axis is
• Components of GBA
• How does the gut influence the cognitive, emotional and nociceptive functions of the brain
• How the Gut Microbiota influences the GBA
• Role of GBA in pediatric pain conditions
• Modulating the GBA
• Targets for pain management
• Foods that regulate the GBA

Links

Other Related and helpful Episodes to Listen to -

Episode# 73. Nutrition Supplements and Pediatric Pain

Episode# 74. Asset or Liability: What You Need to Know about Herbs for Pediatric Pain Management

Episode #71. Acupuncture Rocks for Managing Pediatric Pain management and Beyond with Clara Cohen

Proactive Pain Solutions

Clinicians Pain Evaluation Toolkit

Dr. Dhanu Sant, an integrative pediatrician and trained herbal and plant medicine specialist returns to discuss herbs for pain management to stress management, to their role as adaptogens and beyond.

She discusses safe use of herbs for a variety of health conditions but specifically for pain management, along with misconceptions, caution and .

She has dedicated her work to learning more about plant medicine and herbs to enhance the quality of care that she's providing for her pediatric patients. She says -

I was using a lot of diet and lifestyle remedies, and this felt like a natural adjunct to that.

Takeaways in This Episode

• The reason for Dr Sant to pursue further training herbal and plant medicine in addition to her traditional training as a pediatrician.
• Unique aspects of herbs, spices and plants used as medicine
• Safety issues around some of the commonly used herbs and how to navigate them
• Impact of gut health on pain and immune system and herbs that modulate them
• Herbs for various pain conditions from neonatal period to young adults
• Adaptogens and the role they play in pain and overall health
• Most effective forms to use different herbs
• Caution, safety issues and considerations for when to use herbs
• Resources to learn more about herbs to advance your knowledge, broaden your toolkit or to guide your patients and their families when they use herbs.
• Dr Sant's message to healthcare professionals

Links

Dhanu Sant, MD

Connect with Dr. Sant Twitter Linkedin Facebook

WholeKids Pediatrics

ThriveWell Pediatrics

Episode #33 Critical Role of Primary Care in Pediatric Pain Management

Episode #73 Nutrition, Supplements and Pediatric Pain

Dr. Aviva Romm

Tieraona Low Dog

Proactive Pain Solutions

Resources for Herbal Safety:

• Consumer Lab
• https://www.nal.usda.gov/fnic/herbal-information
• https://medlineplus.gov/druginfo/herb_All.html
• https://www.nccih.nih.gov/health/herbsataglance

About the Guest

Dhanu Sant, MD

Dr. Sant attended medical school at The Ohio State University. She completed her residency at Nationwide Children's Hospital. Prior to starting WholeKids Pediatrics, Dr. Sant was in a private practice for 10 years with a large pediatric group.

Dr. Sant is a primary care pediatrician who has sought out additional training in integrative medicine. Her interest in establishing an integrative practice was spurred by her concern about the increased use and side effects of many medications and her deepening respect for the body's natural healing capabilities.

Continuing education in complementary therapies has allowed Dr. Sant to broaden her treatment options for both preventative and illness care. Dr. Sant is a yoga teacher having finished yoga and prenatal yoga teacher training. In addition, she loves teaching infant massage.

Dr. Sant now lives in Jacksonville, FL with her husband, John and her father. With the loss of her mother in January 2021, Dr. Sant is honored to continue to be able to care for her father. Dr. Sant and John are parents to 3 adult daughters who are finding their way through new ventures in Ohio and Michigan. They visit sunny Florida often!

Dr. Sant is a Columbus native and is a huge fan of Buckeye football. Dr. Sant loves to travel and her bucket list includes a safari in Africa and a trip to New Zealand. In addition, she loves reading, especially about food, eating great food, cooking and yoga.

Ask Ashley Koff, RD, what she recommends as a healthy diet. Her answer? It's always personal.

When it comes to pediatric pain management, nutrition is both challenging and essential for our patients. And the idea of nutrition can be overwhelming, and contradictory, for healthcare professionals as well. My guest, an award winning expert dietician, is also a master at taking big, complex and overwhelming concepts and turning them into simple, bite sized pieces that are easy to understand and put into practice.

Nutritional advice has become a fact sheet based afterthought of our medical practice. Most of us didn't receive the proper training that we need to provide useful guidance to patients, and we only realize this when we need to apply that advice to our own lives and family members.

What's worse, in this era of social media, there is so much emphasis on selling yourself as a physician that the baseline of our oath gets lost. As Ms. Koff puts it beautifully - We don't need to advertise what we can do. We have the tools and knowledge to help people, we need to dig deeper and share how it applies to each individual patients' lifestyles, instead of defaulting to a one size fits all answer. How many times have you said sugar is inflammatory without considering the diet of that season that the patient might be eating? Does the patient even have access to healthy options at home?

A natural marketer, Ms. Ashley Koff had an interest in selling from a young age and studied marketing at Duke prior to her dietetics and nutrition degree. During her own health journey, she herself tried fad and even self-described crazy diets and exercises, but never felt healthy, until a integrative gastroenterologist changed her life simply asking her the questions and showing her a better way to make better and appropriate choices. That started her on her current journey as one of the most respected and sought after Dieticians in the country.

In this episode, we discuss the mistakes we are all guilty of making when it comes to nutritional advice. She shares her best practices and free nutritional resources for you and your patients to use. And she specifically relates that to pain management, especially for children and how we can best support our patients and empower them to make better choices.

• What nutrition truly means
• Popsicle for breakfast anyone? How a breakfast popsicle might be what a pain patient needs!
• What personalization in nutrition means and how it can and should be tailored to our own and our patients' bodies?
• What our medical training lacks when it comes to nutrition and how the focus of practice today is skewed towards selling ourselves and gaining followers. How to turn that around!
• Pain and nutrition especially when it comes to children
• How nutritional considerations for pediatric pain patients differ from consideration for a healthier life style
• What Gamifying nutrition for kids looks like and the results it yields.
• What is the rainbow evaluation and how you can you do it and how often
• Debunking the myths of nutrients vs. nutrition, good and bad foods.
• Role of supplements vs. natural intake. Food sourced nutrients vs. supplements and isollette nutrients
• Role sweeteners and sugars play in our body and in pain (Hint: It's not as bad as the rap it gets)
• Her message to healthcare professionals (Hint: Show not tell!)

Ashley Koff RD

Free Resources: https://thebetternutritionprogram.com/free-resources-from-the-better-nutrition-program/

Episode 50: Stepping Up Pain Care Efforts for African American Patients

Episode 26: Manage Memory, Manage Pain!

Episode 10: Disparities in Pediatric Pain Care

Proactive Pain Solutions Physicians Academy

Proactive Pain Solutions

Clinicians Pain Evaluation Toolkit

Ashley Koff RD

An award-winning nutrition expert, Ashley helps lead the national conversation on better nutrition as a speaker, author, media and industry expert. Selected among CNN's Top 100 health makers, recognized in the Top 10 Social Health Makers in Nutrition (Sharecare.com) and among the top "50 Natural Influencers" in health and nutrition to follow on Twitter (NewHope360 and Shape.com), Koff was also selected for the first list of Top 10 Registered Dietitians in the US by Today's Dietitian Magazine.

Beyond running a thriving integrative nutrition practice working with top entertainment and national leaders, Koff's a highly sought after strategic nutrition consultant for companies like Procter & Gamble, Califia Farms, Nature's Path, Westin, SmartyPants and was appointed the California state representative for the Let's Move campaign. She's currently an advisor for Victress Capital, the Partnership for a Healthier America and Tufts University Friedman School of Nutrition's Entrepreneurship Program and a partner at BeyondBrands.